Re: aortic regurgitation

Posted By Jill on July 04, 1999 at 11:51:14
I am a 34 y/o f. I have been diagnosed with aortic regurgitation.  Echo showed mild to moderate aortic regurg., the rest of the heart is normal (LV isnot dialated).  Dr. said the valve is leaky from rheumatic fever as a child.  My question is will this progress to severe regurg. with LV dialation? If it does progress, at what rate? Can I expect a AVR in the future?  I don't have any s/s except rapid/pounding heartrate.  Also, PCP suggested heart meds, are these necessary?  My BP is low (110/60) HR 80.  I also like to run, is this a problem?
Thanks.
Jill

[mario__0]

Posted By mario on July 04, 1999 at 18:26:45
Hi Jill! may name is Mario and I am 39 years old. Like yourself I had rheumatic fever as a child( SIX YEARS OLD ) Up untill 20 years old there was basicly no problem. I was able to do what I wanted without any symptoms. At about 22 years old my cardiologist decided to put me on lanoxin (strengthens heart contraction) and dyazide( water pill and mild blood pressure pill) I had same cardiologist since 6 years old. She explained that although I was experiencing no symptoms at the time she would do everything to help the heart function with the least workload what we would call preventitive measures. There was no secrets between us and i knew at an early age surgery was in the future but we were going to do what it took to postpone it as much as possible. Jill a leaky aortic valve puts extra strain on a heart muscle because the heart not only has to do its regular job but also pump the blood that backs up into the heart chamber. The heart being a muscle will keep getting bigger and bigger to help compensate for the extra workload. This is were the trouble could result because it could only grow to a certain size before it looses its elasticity and will stay at that abnormally big size. However once the heart reaches a certain size it becomes to big for its own good. Each contraction becomes inefficient because to much energy is wasted in just the contraction of the enlarged heart.So not to drag it on all will be done to postpone the surgery with medications when that no longer works surgery is the next option. No one will operate on you without exhausting all other options. I just had a homograft put in on 05 26 99 and i am on my way to a better life. Jill no one could predict when you will need surgery but lets be thankful that when the time comes options are there to help us....take care Mario

[Jil__0__0]

Posted By Jill on July 05, 1999 at 13:58:15
Thanks Mario. Good luck to you with your new valve.  I am just wondering though is an AVR inevitable?  At what point will my LV start to dilate? When will I know my heart is getting worse? And I HATE the thought of taking ANY pills even if I know they are for my own good. That's why I wonder if the pills are necessary or at what point I should consider taking pills. And I don't know if it is harmful to push my heart with exercise.  Again, thanks!

[mario__0]

Posted By mario on July 05, 1999 at 21:39:28
Hi again Jill, the md jmf gave you good advice. Having a leaky valve usually means that it will progress and eventually require more aggresive (aggressive) treatments. The only way you could tell if the situation is getting worse is by the increase in symptoms ex ( fatigue, palpitations, swollen ankles and just the general sense of continual tiredness ). The other way is by regular echos were one can be compared against the other for heart enlargement. Jill I will pass on to you what was told to me early on in my 20's. My mother was a physiotherapist for 25 years in the hospital and I was close with many cardiologists. One day we were discussing my condition and at the time I said I would never have the surgery. He replied to me " Mario if you feel that strongly about it fine, but remember there will be a time in your life when you will always feel tired and won't be able to do much and you will eventually ask for the surgery yourself" . Well as faith would have it Jill at about 38 years old I wanted the surgery because although still not at the end of my rope I felt the limitations the condition was dictating to me. Remember hook yourself up with a good cardio and follow his advise. For me that is how the cards were dealt and it worked out fine....mario

[Jil__0__0]

Posted By Jill on July 06, 1999 at 12:13:17
Mario, thanks for answering again.  I don't know of anyone else in this position so it's nice to communicate with someone who knows.  How bad was your heart before you had the surgery?  Did you have the Ross procedure or did they use a cadaver valve?  Do they expect to have to repeat the surgery?  Interestingly enough,Arnold Swartzenager had the same surgery you did except his valve was congenital.  I'm not so opposed to the surgery as I am to dying.  I have 6 y/o and 2 1/2 y/o boys and they need their mother.  I don't like the idea of being tied into the whole medical condition of seeing doctors and being examined regularily.  Oh well, deal with the cards I'm dealt!  
Thanks again Mario!  Best of luck!

[mario__0]

Posted By mario on July 06, 1999 at 14:19:01
Jill i know how you feel when I was told surgery is in the near future I did alot of research. I am more fortunate than most because I have 2 doctors in the family and because my mother worked in a hospital for 20 years I asked around alot. How bad was my heart? Well put it this way I have been working as an insurance broker for 20 years and I could more or less go in at 10 am and leave when I want. However towards January 99 I had to be home by 3 pm to konk out for a couple of hours or I wouldn't have made it till the evening. All sports were cut off and I will be frank with you the sex life came to almost a complete stop. I felt the heart just wasn't able to supply the blood and oxygen I needed. My problem with the surgery was that when I last saw the surgeon I was in more or less perfect shape with all the sports I mentioned in the previos posts. I called my cardio he re-evaluated me and I was put on the priority list. I had a straight cadaver valve with a life expectancy of 15 to 20 years. However I will prepare for 10 and hope for 15. The ross procedure did not apeal to me and many other docs I spoke with. The extra risk in mortality and after all not every doc could do it because it is very technically demanding did not appeal to me. I have one valve that doesn't function properly so why should I become a potential doulbe valve patient. Remember the advantage of the ross is that the cadaver is put into the less stressful pulmonary position and your living pulmonary valve because your new aortic valve. Some centers are having the same success with homovital valves in the aortic position. Meaning that the new cadaver valve put into your aortic position is basicly cut out of the cadaver and treated and put in right away so no "freezed dried valve". They are having good results up to 25 years. Remember the ross will also require a repeat surgery to replace the new pulmonic valve. Dr david in toronto is assesing all data from his previous aortic valve repairs. If the data is good he might go ahead with aortic valve repair for people with one leaflet damage. Who knows what the future might hold. If you choose a mechanical valve with a life expectancy of about 35 years or more ATS medical and ON-X valves are doing great with very low inrs( low coumadin dosage). St jude is working on a new coating on their valves which are supposed to cut blood clot formation and infection. In the valve industry there has not been any great breakthrough since the original bileaflet design of the early 80's, but being a very competitive area I feel the next 5 years should proove to be very fruitful in the advances. Hope I didn't confuse you too much contact me anytime. I go back to work in sept 99 so I have alot a free time on my hands....mario










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